Cystic Fibrosis Foundation: Achieving the Mission

Specialized Adult Congenital Heart Care Saves Lives

“…The Adult Congenital Heart Association will build a roadmap of standards based on expert consensus and care guidelines, including expertise in staffing and services with an emphasis on collaboration, in the hope that these will lead to a strengthening network of specialized ACHD care programs and improved quality of care in the United States. [10][11][12] It is estimated by Marelli and colleagues 13 that the United States will require at least 150 ACHD centers to care for the 50% of the ACHD population with moderate and severe forms of CHD. The implications for ACHD program building are far reaching and now have clear and concise data to support this approach.…”

Accelerating commercialization: a new model of strategic foundation funding

“…The foundation receives most of its contributions through individual donations and special events like their walkathons, though in 1999 they also received a gift from the Bill and Melinda Gates Foundation for $20 million (Moukheiber 2001). CFF now employs 600 people and manages 250,000 volunteers (Marshall et al 2009). …”

“…In 1966, CFF created a patient data registry of patients seen at care centers (CFF 2012;Marshall et al 2009). CFF also funds a national care center network, recognized by the NIH as a model for chronic diseases, providing patients with access to treatment and resources across the country and they sponsor the annual North American Cystic Fibrosis Conference, which in 2011 had approximately 4,000 doctors, researchers, and caregivers attend to share ideas and progress (CFF 2012).…”

“…It is composed of a nationwide network of care centers, coordinated at Seattle Children's Research Institute, with laboratories that specialize in conducting clinical trials, interpreting cystic fibrosis outcome measures, and standardizing the research process of clinical trials (CFF 2012;Marshall et al 2009). To match growing need, CFF expanded the TDN in 2009 from 18 to 80 centers (CFF 2012).…”

“…Thirteen centers are focused on translational work to identify new therapies and new ways to measure outcomes from clinical trials (CFF 2012). TDN provides financial, intellectual, and physical resources to researchers, which has led to over 50 clinical trials (Marshall et al 2009;Bain 2006). The TDN program developed after the success of the Research Development Program (RDP), the concept of bringing together top scientists from multiple fields at major universities to pool talent and direct it at basic cystic fibrosis research.…”